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Watching the Wanderers

Late last year, Joe Hendrix, 34, and his fiance were in their new Georgia home when, just before four in the morning, they heard a commotion outside.

A man was trying to open their front door, jiggling the knob and ringing the bell. Hendrix armed himself while his fiancee called the police.

Outside the home, Hendrix confronted what he believed to be a prowler, and the presumed prowler’s two dogs. Hendrix says the unknown man advanced toward him, so he opened fire. The prowler was killed by a shot to the chest several minutes before police officers arrived.

Georgia is a state with a stand your ground law, and it is unlikely that Hendrix will face charges (the district attorney is still considering the case). Even those who question the wisdom of stand your ground laws, which lowered the bar considerably on what qualifies as a justified self-defence shooting, may feel some sympathy for Hendrix, who was on his own property, with a loved one inside the house, while confronting an unknown man in a new neighbourhood in the dead of night.

But there is a wrinkle here: The prowler, 72-year-old retired U.S. Air Force Lt. Colonel Ronald Westbrook, was suffering from Alzheimer’s disease, and, it is now known, had been wandering the neighbourhood, which he had lived in years previously, for many hours before he was shot. Though we cannot know with certainty what was in Westbrook’s diseased mind, it seems probable that, in his confusion, he thought he was trying to get into his own home.

This is just one tragic story, and it’s easy to simply fault Hendrix for pulling the trigger. But that would be to miss the more important problem here. As our society ages, more and more citizens will be afflicted with Alzheimer’s or other forms of dementia and cognitive impairment. When these people go wandering, they need not encounter a frightened home owner with a gun to meet with a tragic end.

Take, for example, the story of a Toronto woman afflicted with dementia. Her family, which chose to remain unidentified, had reportedly been trying to care for the 66-year-old woman themselves. But in January of 2011, while her husband slept, the woman slipped out of her house, into a winter night when temperatures dropped as low as -27C. A newspaper delivery person discovered her body on the front lawn in the predawn hours. Efforts to perform CPR proved impossible, as the woman’s body had frozen solid. News crews at the scene photographed something that has stayed with me in the three years since this sad incident: fingernail marks in the frost covering the window and door of a car parked nearby. In her final moments, she’d tried to claw her way into some kind of shelter, while her family slept safe and warm just a few feet away.

There are thousands of other tragic stories just like this, including one I can speak to personally. As a young child, growing up in a safe and affluent Toronto suburb, there was an old man who terrified all the neighbourhood children. He’d wander the streets, ranting in a foreign language, attempting to let himself into homes and cars at random. What was terrifying to children was, really, just another human tragedy: He had advanced Alzheimer’s, had forgotten all the English he’d learned after moving to Canada, and often wandered out of his daughter’s home, just down the street from mine. One day, as neighbours of ours were having a dinner party, the kids went out into the backyard to play and found the gentleman laying under some trees, dead of exposure.

Wandering is believed to be a behaviour found in perhaps as many as 70% of those afflicted with Alzheimer’s.

There are no reliable statistics on how often tragedies like this happen, or, as happened with my grandfather five years ago, are narrowly avoided (an old friend of mine recognized my grandfather, perceived that he was lost and returned him safely home many hours after he’d wandered away). But wandering is believed to be a behaviour found in perhaps as many as 70% of those afflicted with Alzheimer’s. With an estimated 500,00o Canadians suffering from Alzheimer’s or a related dementia, and millions more in the U.S., the scale of the problem becomes apparent.

Nor is it easily dealt with. Most dementia patients who wander off are caught within minutes, but some small number — again, no stats are available — will always get away. The cause of wandering is believed to be a combination of sufferers not recognizing their current environments, even if they live there, and setting off to find something more familiar, or of Alzheimer’s patients reliving earlier phases of their lives. My grandfather, for instance, in his final years, was constantly trying to leave the house, even in the dead of night, to “catch the bus to work.” He’d been retired for decades.

Locking the doors doesn’t work. Most dementia sufferers retain sufficient basic skills to overcome that obstacle. Setting alarms can help, but can also be circumvented. Passersby, even well-meaning ones, are not a reliable line of defence, as many dementia patients, even while hopelessly lost, retain the social skills necessary to engage in pleasant chit chat sufficient to allay the fears of a concerned citizen (indeed, in the case of Lt. Col. Westbrook, hours before his death, he was stopped by police officers on patrol, and casually told them that he lived just up the road and was out to collect his mail. The officers believed him).

Family members are generally the only means preventing wandering, but that has limits. As Alzheimer’s and dementia typically afflict the aged, it is not uncommon for the primary caregiver to be an equally aged spouse, who requires rest and may not be as observant as they once were. Children often take in elderly parents suffering from dementia, but still have jobs and often children of their own to support. Wandering off only takes a moment’s distraction.

In recent years, several novel approaches have been attempted. Halifax conducted a trial project in 2012, where dementia patients were fitted with GPS monitoring devices, worn like wristwatches, that also allowed two-way radio communication. The project was small, with only a handful of patients enrolled, but was very successful, allowing the police to locate two patients who wandered off within minutes of being alerted. The program was only a 12-month trial project, and was discontinued once provincial funding lapsed. Peel Region, in the Greater Toronto Area, can equip dementia sufferers with small, wearable radio frequency beacons. If the person wanders off, special police units can locate the beacon and thus, it is hoped, the person. Many jurisdictions across North America have dementia “registries” where families can outfit their loved one with a “medical alert” style piece of jewelry that contains their name, notes their memory issues and has an emergency contact number.

Each of these solutions has drawbacks, of course. Electronic monitoring can be expensive and raises civil liberties concerns — should the ill be tracked in a manner akin to criminals freed on bail? Jewelry can be forgotten, or simply not seen. And, again, you have to know someone is in trouble to help them, and many dementia patients can easily engage in pleasant conversation.

The best approach for those whose dementia has reached an advanced state is, sadly, institutional care in a controlled environment that specializes in caring for those with dementia. Only there can round-the-clock medical care and monitoring be provided, in a secure environment. The care facility my grandfather lived out his final days in remained secure by putting the elevator buttons inside a wooden box. It was simple but effective — the patients never thought to open it. And there are also novel approaches; a care facility in Germany cut down on escapes by putting a decoy bus stop right outside the front doors. Dementia patients who escaped would simply line up to wait for the next bus and be brought back inside. The idea was so successful it was quickly adopted elsewhere. These facilities don’t have a flawless record, as evidenced by the death of an 82-year-old North Vancouver woman last month, who slipped through multiple lines of defence and escaped, to die of hypothermia. But they are a better solution than leaving it all up to an elderly, exhausted spouse.

These care homes are also, however, very, very expensive. Public health systems, already hard pressed to deliver basic services, have been slow to provide extra beds, and private beds are beyond the financial means of many families. Dementia patients are sometimes put into non-specialized elder-care facilities, where they can pose a threat to other patients — in 2011, in Winnipeg, two men with dementia, residing in a non-specialized home, got into a shoving match, with fatal results for one of them. When police arrived minutes later to arrest the killer — if that term truly applies — he had forgotten the incident ever occurred, and, in fact, believed he was at work.

In such tragic cases, where one’s dementia can turn violent (a sadly common event), patients may be directed to jails or primary care hospitals with security staffs, instead. This is both inhumane and expensive, but is sometimes the only alternative for want of available beds in a specialized care home. In many cases, families would rather continue to attempt to care for a loved one at home rather than send them into a potentially dangerous or uncomfortable environment, at risk to themselves and, sadly, the dementia victim themselves.

An estimated 500,000 Canadians have Alzheimer’s or a comparable condition now, and that’s projected to top more than one million cases in the next generation. The systems we have in place now can’t keep up.

Alzheimer’s and related dementias are a deeply unpleasant disease. They spend years whittling away the independence and dignity of patients before finally getting around to mercifully killing what’s left of them. It is an excruciating thing to watch happen to someone you love, and an incredibly difficult thing to think about in advance.

But, as a society, we must face up to this growing problem. Our problems with Alzheimer’s and dementia are just getting started. Unless a cure is found before millions of baby boomers enter their twilight years, our very real problem with patients wandering off into the cold night or onto private property is going to get much, much worse. An estimated 500,000 Canadians have Alzheimer’s or a comparable condition now, and that’s projected to top more than one million cases in the next generation. The systems we have in place now can’t keep up as is. They will be rendered entirely useless in short order unless more is done.

But there is, as yet, no sign that any of our governments are giving this issue the attention is deserves. Until they do, the sad story of Lt. Col. Ronald Westbrook will be repeated again and again — different, perhaps, in the details, but tragically similar in outcome.

Reprinted with the express permission of National Post, a division of Postmedia Network Inc.